Understanding the experiences of whānau caregivers of stroke survivors

Abstract

INTRODUCTION: Access to support services for post-stroke care is essential for family/whānau to sustain their commitment to the long-term care of stroke survivors. Lack of, and inappropriate support along the post-stroke recovery spectrum can influence how care is provided to stroke survivors and can affect the wellbeing of whānau caregivers. Cultural factors have been found to influence how whānau use support services. Ethnocultural research that explores whānau caregivers’ experiences, especially for Māori is lacking.

AIM: To explore the experiences of whānau caregivers caring for stroke survivors in New Zealand and find ways of improving accessibility of support services for whānau across the post-stroke caregiving spectrum.

METHODS: Kaupapa Māori research and interpretive description provided the methodological framework for this study. Semi-structured face-to-face interviews were conducted with three Māori whānau about their experiences caring for a stroke survivor. Interviews were audio recorded and transcribed verbatim. Data was analysed thematically within a qualitative framework using open coding.

FINDINGS: Three general themes were identified: a) caregiver experiences, b) taha Māori: a cultural perspective and c) support services. The first theme captures whānau caregiving experiences across the stroke spectrum including their access to, and use of, support services and the 24-hour nature of caring for a stroke survivor, which for some was experienced as burdensome. The theme of taha Māori encapsulates a cultural perspective of participants’ caregiving experiences, including the importance of individual whānau and wider whānau members. The final theme identifies participants’ need for culturally specific support services, and the possible usefulness of technological solutions in extending support to caregivers.

CONCLUSION: This study generated insights into the complexity of whānau caregiving experiences posthospital discharge, as whānau caregiver’s needs changed over the post-stroke care spectrum.

Providing care is magnified by several factors including health and socioeconomic factors, cultural norms and notions of whānau. Findings indicate the limitations with resource provision and gaps in the way support was offered by healthcare professionals and service providers. Whānau expressed a need for culturally specific information and resources that could better equip them to provide effective care. Strategies that comprise technological solutions could bridge the gap in improving support for whānau post-stroke.